http://www.cc.nih.gov/ccc/patient_education/pepubs/mngadrins.pdf I just posted this on the CAH message board (danny's CAH message board). It has pictures step...
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Denise G.
Breezy6692@...
Jul 30, 2000 8:50 am
Hi, I was born with the classical salt wasting CAH 45 years ago,when not much was known about this illness.Growing up was not fun at all. My mother and father...
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Anna
almiller@...
Jul 30, 2000 1:02 pm
I could not begin to imagine how hard it must have been for you having to try and deal with so many issues at such a young age. Not to mention having to go...
21
Denise G.
Breezy6692@...
Jul 31, 2000 2:26 am
... Not ... morning ... say ... look ... through ... concern. We all have our cross to bear and each one is heavy enough for us.It doesn't lesson burdens in...
22
Denise G.
Breezy6692@...
Aug 2, 2000 6:23 am
At 35 I was told I had cataracts but they weren't that bad then, now 10 years later, I have what they call(typical steriod cataracts).I been using reading...
23
preston
preston@...
Aug 2, 2000 6:24 am
My name is Roberta - I have two children with CAH (boys). My daughter (second child) died at age 2 and 1/2 years old. She had a fever and the doctor on call...
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Debbie Doyle
doyle@...
Aug 3, 2000 3:35 am
Dear Roberta: How horrible. I can't even image. Sometimes this board scares me when I read of those sort of things, but I try to use it also as a wake-up...
25
Breezy6692@...
Aug 3, 2000 3:36 am
Roberta, I'm so sorry for the great loss of your daughter you are suffering. Liquid Cortif was not available back in the 50's and thank God it wasn't. From all...
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preston
preston@...
Aug 4, 2000 4:50 am
Did anyone read about the experimental cure for diabetics. They transplant eyelet cells and then the diabetic does not need medication anymore. I wonder if...
27
Anna
almiller@...
Aug 4, 2000 4:57 am
Hello again, and Thank Your for your Kind words in Reply to my post to you... Im writting you again to ask you to please reconsider your decision to stop...
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Debbie Doyle
doyle@...
Aug 4, 2000 4:42 pm
I agree totally. It would be taking another step back. Debbie ... From: Anna <almiller@...> To: <adrenal_hyperplasia@egroups.com> Sent: Thursday,...
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preston
preston@...
Aug 5, 2000 8:30 pm
Anna and Debbie I am not sure what happened, but I your thoughts are very true. On the CAH board (Danny's Carlton started it). I have wrote something and it...
30
Jenny
jenannlynn@...
Oct 30, 2000 6:01 am
My little, 8 mo. old baby girl has just been diagnosed with CAH-- after several months of saying to the doctors "something is not right" and the majority of...
31
Robyn
carolecathlynann@...
Oct 31, 2000 10:34 pm
Hello everyone. You are a God send to me. Up until a few months ago I never had a computer. So I had no way of finding any support groups. I live here in...
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preston
preston@...
Oct 31, 2000 10:37 pm
No vomiting is not an reaction to the cortef. She should go into the hospital right away until she is no longer vomiting. Because of dehydration and a...
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Debbie Doyle
doyle@...
Oct 31, 2000 10:38 pm
Jenny, I also have a little girl born with CAH, however, she was diagnosed at birth and started her meds at day 4 of her precious life. I have never ...
34
jenannlynn@...
Nov 1, 2000 1:42 am
Debbie, I SO appreciated your email. Yes, we feel very fortunate that our little girl has done so well considering everything. The doctor's can't believe it ...
35
jenannlynn@...
Nov 1, 2000 9:10 pm
Thanks Roberta for the information. Yesterday was a much better day, and we were able to keep all of the medication down. I think she did not like the ...
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Debbie Doyle
doyle@...
Nov 2, 2000 6:23 am
Exuse my ignorance, but what is "pseudo" and your DNA karotype is 46xx, what does all that mean? No child or person with CAH should ever feel like a "freak"....
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carolecathlynann@...
Nov 2, 2000 9:50 pm
My name is Carole in regards to your question what pseudo means and 46XX. I am a Nonadrenal female pseudohermaphrodite. One of the causes is CAH. I am 58...
38
preston
preston@...
Nov 3, 2000 2:44 pm
jenny - I am glad that she is better. How creative of you to put it in her food and her not know it. Mine would know because they watched everything I do (even...
39
jenannlynn@...
Nov 4, 2000 5:54 am
Thank you, thank you, thank you for those websites! They are exactly what I have been searching for, but no search engine gave me them! :) I have a few ...
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Georgianna Copeland
georgiannac@...
Nov 4, 2000 5:55 am
Dear Jenny, That is a good idea...I like that idea. What is the medication that she is on called? I am on dexamethasine (decadron) for mine nightly and they...
41
preston
preston@...
Nov 4, 2000 5:57 am
Carole - I am sorry about your childhood. Were you born with CAH - classical salt wasting CAH? Did you every have an adrenal crisis? Where were you born?...
42
carolecathlynann@...
Nov 5, 2000 8:23 am
Hello Preston this is Carole how are you. As to your questions yes I was born with (CAH) and as for treatment I had a very sick childhood. Like I said in my...
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preston
preston@...
Nov 5, 2000 8:23 am
http://congenitaladrenalhyperplasia.org/mb/page1.htm Jenny - Here is another web site for CAH - this one is a message board for parents for CAH children. Danny...
44
preston
preston@...
Nov 5, 2000 8:24 am
When to give the injection of solu-cortef or triple the cortef ? My ped endo said 101 fever but 100 fever is and can be just as bad. For one thing the...
45
shoppathemaster@...
Nov 5, 2000 8:24 am
i am a 37 year old who was diagnosed with CAH in 1990. does anyone know the statistics of how many people actually suffer from this? i know it is hereditary,...
46
jenannlynn@...
Nov 6, 2000 7:09 am
In a message dated 11/4/2000 12:56:28 AM US Eastern Standard Time, georgiannac@... writes: << What is the medication that she is on called? I am on...
47
jenannlynn@...
Nov 6, 2000 7:09 am
In a message dated 11/5/2000 3:26:54 AM US Eastern Standard Time, preston@... writes: <<...
